happy birthday uncle nick!!

This past weekend we made a short trip to Michigan to celebrate my brother's 30th birthday. We played in a euchre tournament, ate yummy cake, and spent time with family and friends.

Asher is doing great (currently on the brink of falling asleep and fighting every moment of it). He has been enjoying lots of different foods including avocados, peaches, squash, carrots, and even a little chicken pureed in. Today he ate baby puffs, and while he wasn't too sure about it at first, he got used to it pretty quickly.

We have started Asher on Carnitine. I haven't noticed much of a change yet, but it hasn't even been a week. We have been playing with the dosage a little trying to find what works best for him. Soon we will be starting the HGH, which will be a big step for us. It has been approved on our insurance so we just have to wait to get it and get trained on administering it to him. We are very excited about all these upcoming changes and are looking forward to seeing Asher continue to grow.

Here are a few pictures from this weekend.

Some PWS resources

We are on the verge of starting some supplements for Asher and I am realizing how confusing all this can be. I wanted to pass on some great resources that are helping me find clarity for any other parents who might find it useful. Please contact me if you've found something that I can add to this list! My email address is agriffithatkins@gmail.com

Connecting the Dots - helpful info on current research and suggested supplements/dosage

PWS Therapies - Specifics on supplements and the Hedstrom Family's experience with them

PWS notes

Coloradoooo!

I'm sitting here at home (finally!) and our house is a wreck and we are all very sleepy. Asher has feeding therapy this morning at 9:30, otherwise, I would be snuggled up in bed just like the lil guy is right now. We had a great trip to Colorado for Ryan & Kristi's wedding. I was so, so blessed to be the matron of honor and be a part of this union. It was refreshing to see their love and passion for one another and I have no doubt that this marriage will make it through life's ups and downs! The wedding was absolutely stunning, on the lake with a spectacular view of the mountains!

Asher did AMAZING on the plane! He was happy and giggling on the way home, and took a nice nap on the way there. Our flight out of CO yesterday morning (11:45 am), ended up being canceled because the plane hit birds (hmmm), so we were put on a later flight into O'Hare (even though we flew into Midway. But -- long story short, we made it home in one piece and life goes on!

It was great to see so many old friends. There were a lot of Taylor friends there, and our dear friends Emily & Dennis (from Chicago and also Taylor grads) were there, too. It seems like we were just at their wedding, although it was almost a year ago. On top of that, Will's family was able to fly out to the mountains to help out with Asher. We are truly blessed.

Ok - bear with me here -- you know how snap-happy I am.

New face

My bad on keeping up with the postings. This one is long over due. Asher had his g-tube surgery last week and it went spectacularly. This means that his feeding tube is now a little plug in his stomach instead of the one coming out his nose. It's amazing how much better this is. You can see by the look on his face that he is loving it. He's all recovered from the surgery and is doing great. Enjoy the pics.